Monitoring Drug Side-Effects

  • Gerda M. de Kuijper
  • Arne Risselada
  • Rianne van Dijken
Part of the Autism and Child Psychopathology Series book series (ACPS)


People with intellectual disabilities are one of the most heavily medicated population in society. This issue is compounded by the general vulnerability of this group and the frequent medical complications that they display. Especially psychotropic drugs are frequently prescribed. These agents may cause serious side-effects, while people with intellectual disability have increased vulnerability for these side-effects. As a result, the monitoring of psychotropic drug side-effects for this population should be a top priority.

Topics covered in this chapter will be a definition of side-effects, a description of the various methods and procedures used to assess psychotropic drugs’ side-effects, including standardized tests, and the monitoring and management of side-effects. Current status and future directions with respect to these issues will be covered.


  1. Alper, K., Schwartz, K. A., Kolts, R. L., & Khan, A. (2007). Seizure incidence in psychopharmacological clinical trials: An analysis of food and drug administration (FDA) summary basis of approval reports. Biological Psychiatry, 62(4), 345–354.PubMedCrossRefGoogle Scholar
  2. Bella, A. J., & Shamloul, R. (2014). Psychotropics and sexual dysfunction. Central European Journal of Urology, 66(4), 466–471. Scholar
  3. Berm, E. J., Risselada, A. J., Mulder, H., Hak, E., & Wilffert, B. (2013). Phenoconversion of cytochrome P450 2D6: The need for identifying the intermediate metabolizer genotype. The Journal of Clinical Psychiatry, 74(10), 1025. Scholar
  4. Beumer, S., & Maes-Festen, D.A.M. (2017). Reduction or discontinuation of antipsychotics for challenging behaviour in adults with intellectual disability: Why does it fail? The Lancet Psychiatry, 4(3), e2 Scholar
  5. Brandt, C., Lahr, D., & May, T. W. (2015). Cognitive adverse events of topiramate in patients with epilepsy and intellectual disability. Epilepsy & Behavior : E&B, 45, 261–264. Scholar
  6. Brown, M., & McCann, E. (2018). Sexuality issues and the voices of adults with intellectual disabilities: A systematic review of the literature. Research in Developmental Disabilities, 74, 124–138. Scholar
  7. Cahn, W., Ramlal, D., Bruggeman, R., et al. (2008). Preventie en behandeling van somatische complicaties bij antipsychoticagebruik. Tijdschrift voor psychiatrie, 50, 579–591.PubMedGoogle Scholar
  8. Chen, C. H., Huang, M. C., Kao, C. F., Lin, S. K., Kuo, P. H., Chiu, C. C., & Lu, M. L. (2013). Effects of adjunctive metformin on metabolic traits in nondiabetic clozapine-treated patients with schizophrenia and the effect of metformin discontinuation on body weight: A 24-week, randomized, double-blind, placebo-controlled study. The Journal of Clinical Psychiatry, 74(5), e424–e430. Scholar
  9. Chen, W. Y., Chen, L. Y., Liu, H. C., Wu, C. S., Yang, S. Y., Pan, C. H., … Kuo, C. J. (2017). Antipsychotic medications and stroke in schizophrenia: A case-crossover study. PLoS One, 12(6), e0179424. Scholar
  10. Cooper, S. A., McLean, G., Guthrie, B., McConnachie, A., Mercer, S., Sullivan, F., & Morrison, J. (2015). Multiple physical and mental health comorbidity in adults with intellectual disabilities: Population-based cross-sectional analysis. BMC Family Practice, 16, 110. Scholar
  11. Cooper, S. A., Smiley, E., Morrison, J., Williamson, A., & Allan, L. (2007). Mental ill-health in adults with intellectual disabilities: Prevalence and associated factors. The British Journal of Psychiatry : The Journal of Mental Science, 190, 27–35. Scholar
  12. de Boer, M. K., Castelein, S., Bous, J., van den Heuvel, E. R., Wiersma, D., Schoevers, R. A., & Knegtering, H. (2013). The antipsychotics and sexual functioning questionnaire (ASFQ): Preliminary evidence for reliability and validity. Schizophrenia Research, 150(2–3), 410–415. Scholar
  13. de Boer, M. K., Castelein, S., Wiersma, D., Schoevers, R. A., & Knegtering, H. (2014). A systematic review of instruments to measure sexual functioning in patients using antipsychotics. Journal of Sex Research, 51(4), 383–389. Scholar
  14. de Boer, M. K., Castelein, S., Wiersma, D., Schoevers, R. A., & Knegtering, H. (2015). The facts about sexual (dys)function in schizophrenia: An overview of clinically relevant findings. Schizophrenia Bulletin, 41(3), 674–686. Scholar
  15. de Kuijper, G., Evenhuis, H., Minderaa, R., & Hoekstra, P. (2014). Effects of controlled discontinuation of long-term used antipsychotics for behavioural symptoms in individuals with intellectual disability. Journal Intellectual Disability Research, 58(1), 71–83. Scholar
  16. de Kuijper, G., Mulder, H., Evenhuis, H., Scholte, F., Visser, F., & Hoekstra, P. J. (2013). Determinants of physical health parameters in individuals with intellectual disability who use long-term antipsychotics. Research in Developmental Disabilities, 34(9), 2799–2809. Scholar
  17. de Kuijper, G., & van der Putten, A. A. J. (2017). Knowledge and expectations of direct support professionals towards effects of psychotropic drug use in people with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 30(Suppl 1), 1–9. Scholar
  18. de Kuijper, G. M., & Hoekstra, P. J. (2016). Assessment of drug-associated extrapyramidal symptoms in people with intellectual disability: A comparison of an informant-based scale with clinical rating scales. Journal of Clinical Psychopharmacology, 36(5), 508–512. Scholar
  19. de Kuijper, G. M., & Hoekstra, P. J. (2017). Physicians‘ reasons not to discontinue long-term used off-label antipsychotic drugs in people with intellectual disability. Journal of Intellectual Disability Research, 61(10), 899–908. Scholar
  20. de Leon, J., Greenlee, B., Barber, J., Sabaawi, M., & Singh, N. N. (2009). Practical guidelines for the use of new generation antipsychotic drugs (except clozapine) in adult individuals with intellectual disabilities. Research in Developmental Disabilities, 30(4), 613–669. Scholar
  21. de Winter, C. F., Bastiaanse, L. P., Hilgenkamp, T. I., Evenhuis, H. M., & Echteld, M. A. (2012). Overweight and obesity in older people with intellectual disability. Research in Developmental Disabilities, 33(2), 398–405. Scholar
  22. Donley, M., Chan, J., & Webber, L. (2012). Disability support workers’ knowledge and education needs about psychotropic medication. British Journal of Learning Disabilities, 40(4), 286–291. Scholar
  23. Doody, O., Slevin, E., & Taggart, L. (2018). Families‘ perceptions of the contribution of intellectual disability clinical nurse specialists in Ireland. Journal of Clinical Nursing, 27(1–2), e80–e90. Scholar
  24. Gil-Llario, M. D., Morell-Mengual, V., Ballester-Arnal, R., & Diaz-Rodriguez, I. (2018). The experience of sexuality in adults with intellectual disability. Journal of Intellectual Disability Research, 62(1), 72–80. Scholar
  25. Haider, S. I., Ansari, Z., Vaughan, L., Matters, H., & Emerson, E. (2014). Prevalence and factors associated with polypharmacy in victorian adults with intellectual disability. Research in Developmental Disabilities, 35(11), 3071–3080. Scholar
  26. Haw, C., & Stubbs, J. (2005). A survey of off-label prescribing for inpatients with mild intellectual disability and mental illness. Journal of Intellectual Disability Research, 49(Pt 11), 858–864. Scholar
  27. Hsu, W. T., Esmaily-Fard, A., Lai, C. C., Zala, D., Lee, S. H., Chang, S. S., & Lee, C. C. (2017). Antipsychotics and the risk of cerebrovascular accident: A systematic review and meta-analysis of observational studies. Journal of the American Medical Directors Association, 18(8), 692–699. Scholar
  28. Hugenholtz, G. W., Heerdink, E. R., Meijer, W. E., Stolker, J. J., Egberts, A. C., & Nolen, W. A. (2005). Reasons for switching between antipsychotics in daily clinical practice. Pharmacopsychiatry, 38(3), 122–124. Scholar
  29. Jenkins, R. (2000). Use of psychotropic medication in people with a learning disability. British Journal of Nursing (Mark Allen Publishing), 9(13), 844–850. Scholar
  30. Koch, A. D., Vogel, A., Becker, T., Salize, H. J., Voss, E., Werner, A., … Schutzwohl, M. (2015). Proxy and self-reported quality of life in adults with intellectual disabilities: Impact of psychiatric symptoms, problem behaviour, psychotropic medication and unmet needs. Research in Developmental Disabilities, 45–46, 136–146. Scholar
  31. Lambert, T. L., Farmer, K. C., & Brahm, N. C. (2013). Evaluation of serum prolactin levels in intellectually disabled patients using antipsychotic medications. International Journal of Endocrinology and Metabolism, 11(1), 57–61. Scholar
  32. Leucht, S., Cipriani, A., Spineli, L., Mavridis, D., Orey, D., Richter, F., … Davis, J. M. (2013). Comparative efficacy and tolerability of 15 antipsychotic drugs in schizophrenia: A multiple-treatments meta-analysis. Lancet (London, England), 382(9896), 951–962. Scholar
  33. Maher, R., Hanlon, J., & Hajjar, E. (2014). Clinical consequences of polypharmacy in the elderly. Expert Opinion Drug Safe, 13(1), 57–65. Scholar
  34. Mahmood, S., Booker, I., Huang, J., & Coleman, C. I. (2013). Effect of topiramate on weight gain in patients receiving atypical antipsychotic agents. Journal of Clinical Psychopharmacology, 33(1), 90–94. Scholar
  35. Matson, J. L., & Cervantes, P. E. (2013). Current status of the matson evaluation of drug side effects (MEDS). Research in Developmental Disabilities, 34(5), 1849–1853. Scholar
  36. Matson, J. L., & Mahan, S. (2010). Antipsychotic drug side effects for persons with intellectual disability. Research in Developmental Disabilities, 31(6), 1570–1576. Scholar
  37. Matson, J. L., Mayville, E. A., Bielecki, J., Barnes, W. H., Bamburg, J. W., & Baglio, C. S. (1998). Reliability of the matson evaluation of drug side effects scale (MEDS). Research in Developmental Disabilities, 19(6), 501–506.PubMedCrossRefGoogle Scholar
  38. Mentzel, T. Q., Lieverse, R., Levens, A., Mentzel, C. L., Tenback, D. E., Bakker, P. R., … van Harten, P. N. (2016). Reliability and validity of an instrument for the assessment of bradykinesia. Psychiatry Research, 238, 189–195. Scholar
  39. Mentzel, T. Q., Mentzel, C. L., Mentzel, S. V., Lieverse, R., Daanen, H. A., & van Harten, P. N. (2016). Instrumental assessment of bradykinesia: A comparison between motor tasks. IEEE Journal of Biomedical and Health Informatics, 20(2), 521–526. Scholar
  40. O’Dwyer, M., Maidment, I. D., Bennett, K., Peklar, J., Mulryan, N., McCallion, P., … Henman, M. C. (2016). Association of anticholinergic burden with adverse effects in older people with intellectual disabilities: An observational cross-sectional study. The British Journal of Psychiatry: The Journal of Mental Science, 209(6), 504–510. Scholar
  41. O’Dwyer, M., Peklar, J., McCallion, P., McCarron, M., & Henman, M. C. (2016). Factors associated with polypharmacy and excessive polypharmacy in older people with intellectual disability differ from the general population: A cross-sectional observational nationwide study. BMJ Open, 6(4), e010505. Scholar
  42. Pereira, V. M., Arias-Carrion, O., Machado, S., Nardi, A. E., & Silva, A. C. (2014). Bupropion in the depression-related sexual dysfunction: A systematic review. CNS & Neurological Disorders Drug Targets, 13(6), 1079–1088.CrossRefGoogle Scholar
  43. Poyurovsky, M., Nave, R. F., Epstein, R. F., Tzischinsky, O. F., Schneidman, M., Barnes, T. R., … Lavie, P. (2000). Actigraphic monitoring (actigraphy) of circadian locomotor activity in schizophrenic patients with acute neuroleptic-induced akathisia. European Neuropsychopharmacology, 10(3), 171–176.PubMedCrossRefGoogle Scholar
  44. Ramerman, L., de Kuijper, G., & Hoekstra, P. J. (2017). Adherence of clinicians to guidelines for the prescription of antipsychotic drugs to people with intellectual disabilities. Advances in Mental Health and Intellectual Disabilities, 11(3), 110–125. Scholar
  45. Ramerman, L., Hoekstra, P. J., & de Kuijper, G. (2018b). Exploring barriers and facilitators in the implementation and use of guideline recommendations on antipsychotic drug prescriptions in people with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 31(6), 1062–1070.PubMedCrossRefGoogle Scholar
  46. Ramerman, L., Hoekstra, P. J., & de Kuijper, G. (2018a). Health-related quality of life in people with intellectual disability who use long-term antipsychotic drugs for challenging behaviour. Research in Developmental Disabilities, 75, 49–58. Scholar
  47. Scheifes, A., Egberts, T. C., Stolker, J. J., Nijman, H. L., & Heerdink, E. R. (2016). Structured medication review to improve pharmacotherapy in people with intellectual disability and behavioural problems. Journal of Applied Research in Intellectual Disabilities, 29(4), 346–355. Scholar
  48. Scheifes, A., Walraven, S., Stolker, J. J., Nijman, H. L., Egberts, T. C., & Heerdink, E. R. (2016). Adverse events and the relation with quality of life in adults with intellectual disability and challenging behaviour using psychotropic drugs. Research in Developmental Disabilities, 49–50, 13–21. Scholar
  49. Sheehan, R., Hassiotis, A., Walters, K., Osborn, D., Strydom, A., & Horsfall, L. (2015). Mental illness, challenging behaviour, and psychotropic drug prescribing in people with intellectual disability: UK population based cohort study. BMJ (Clinical Research Ed.), 351, h4326. Scholar
  50. Sheehan, R., Horsfall, L., Strydom, A., Osborn, D., Walters, K., & Hassiotis, A. (2017). Movement side effects of antipsychotic drugs in adults with and without intellectual disability: UK population-based cohort study. BMJ Open, 7(8), e017406–2017-017406. Scholar
  51. Shore, J., Vo, A., Yellowlees, P., Waugh, M., Schneck, C., Nagamoto, H., & Thomas, M. (2015). Antipsychotic-induced movement disorder: Screening via telemental health. Telemedicine Journal and e-Health: The Official Journal of the American Telemedicine Association, 21(12), 1027–1029. Scholar
  52. Smiley, E., Cooper, S. A., Finlayson, J., Jackson, A., Allan, L., Mantry, D., … Morrison, J. (2007). Incidence and predictors of mental ill-health in adults with intellectual disabilities: Prospective study. The British Journal of Psychiatry : The Journal of Mental Science, 191, 313–319. Scholar
  53. Swen, J. J., Nijenhuis, M., de Boer, A., Grandia, L., Maitland-van der Zee, A. H., Mulder, H., … Guchelaar, H. J. (2011). Pharmacogenetics: From bench to byte—An update of guidelines. Clinical Pharmacology and Therapeutics, 89(5), 662–673. Scholar
  54. Taua, C., Hepworth, J., & Neville, C. (2012). Nurses‘ role in caring for people with a comorbidity of mental illness and intellectual disability: A literature review. International Journal of Mental Health Nursing, 21(2), 163–174. Scholar
  55. Thom, R. P., Grudzinskas, A. J., Jr., & Saleh, F. M. (2017). Sexual behavior among persons with cognitive impairments. Current Psychiatry Reports, 19(5).
  56. Tobi, H., Scheers, T., Netjes, K. A., Mulder, E. J., de, B. A., & Minderaa, R. B. (2005). Drug utilisation by children and adolescents with mental retardation: A population study. European Journal of Clinical Pharmacology, 61(4), 297–302.PubMedCrossRefGoogle Scholar
  57. Trollor, J. N., Salomon, C., & Franklin, C. (2016). Prescribing psychotropic drugs to adults with an intellectual disability. Australian Prescriber, 39(4), 126–130. Scholar
  58. Visser, M., Marinus, J., Stiggelbout, A. M., & Van Hilten, J. J. (2004). Assessment of autonomic dysfunction in parkinson‘s disease: The SCOPA-AUT. Movement Disorders : Official Journal of the Movement Disorder Society, 19(11), 1306–1312. Scholar
  59. Warle-van Herwaarden, M. F., Kramers, C., Sturkenboom, M. C., van den Bemt, P. M., De Smet, P. A., & Dutch HARM-Wrestling Task Force. (2012). Targeting outpatient drug safety: Recommendations of the dutch HARM-wrestling task force. Drug Safety, 35(3), 245–259. Scholar
  60. Young, S. L., Taylor, M., & Lawrie, S. M. (2014). “First do no harm”. A systematic review of the prevalence and management of antipsychotic adverse effects. Journal of Psychopharmacology (Oxford, England), 29(4), 353–362. Scholar
  61. Zaal, R. J., Ebbers, S., Borms, M., Koning, B., Mombarg, E., Ooms, P., … Evenhuis, H. M. (2016). Medication review using a systematic tool to reduce inappropriate prescribing (STRIP) in adults with an intellectual disability: A pilot study. Research in Developmental Disabilities, 55, 132–142. Scholar

Copyright information

© Springer Nature Switzerland AG 2019

Authors and Affiliations

  • Gerda M. de Kuijper
    • 1
  • Arne Risselada
    • 2
  • Rianne van Dijken
    • 3
  1. 1.Centre for Intellectual Disabilities & Mental Health/GGZ Drenthe ResearchAssenThe Netherlands
  2. 2.Department of Clinical PharmacyWilhelmina HospitalAssenThe Netherlands
  3. 3.Mooi mijn lijf, Intellectual Disability Health Care & Sexology PracticeAssenThe Netherlands

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